A blog about Central Pain Syndrome, commonly referrred to as CPS. Written by a patient who has acquired it as the result of a thalamic stroke, it is intended to be a site for discussion of its symptoms, its causes, its horros, its treatments (or lack thereof), and a personal journal of my own attempts to understand and ameliorate a life lived in the constant burning of the fires of Hell.

Depressive realism is the theory that that depressed individuals make more realistic inferences than non-depressed individuals. Although depressed individuals are thought to have a “negative cognitive bias” that results in recurrent, negative automatic thoughts, maladaptive behaviors, and dysfunctional world beliefs, depressive realism argues not only that this negativity may reflect a more accurate appraisal of the world but also that non-depressed individuals’ appraisals are positively biased.

In other words, depressed people see the world, their place in it, and their chances much more realistically that happy and optimistic people do. Of course, everybody would rather be around a happy and optimistic person, whether to work with them or be friends with them. It was just my dumb luck to become a depressed person during college and my first go-round at grad school at the end of the ’70s. Perhaps “luck” isn’t the word…genetics, environment, early education, all of these play a role in creating a person’s lifetime outlook.

It wouldn’t be fair of me to convey the life of a CPS patient without talking about depression – specifically, my depression, and the crushing weight it’s put me under these past 8 to 10 months. This past year, I have been deeply depressed. When I look back over my life since high school, I can see the destructive role that depression has played in my life. Its main destructive force has been that it has disposed me to think that a fight is not worth the candle. I can see that this has been what has happened to me. The financial situation in my home has been *terrible.* Ever since Sandy, we are in an active foreclosure process., and the mortgage company will no longer negotiate with us. I awaken almost every day expecting to see a Sheriff’s Sale notice taped to the front door. Our business has suffered so grievously in the past year, between the decline of the middle class and the decline of the PC, that we barely bring home enough gross in the month to cover utilities, food and gas. I haven’t gone to my doctor’s in almost a year, because I can’t afford the $125 bucks. My doctor has therefore refused to refill my antidepressants and one of my muscle relaxants – which has made it almost impossible to sleep more than 3 hours at a time. I have no way to earn money, and am selling things on eBay to pay for our oil this cruel and freezing winter.

All of this financial pressure has put a tremendous strain on our marriage. Jack told me today that neither of us have cheated, or are thinking of cheating, on each other – and that may be as good as it gets. After 25 years, isn’t that enough? After all, he cannot forget the things I did that he believes are the reason we are where we are today: my breakdown that led to the end of my English doctorate; that I never found a career in the next 20 years; that we spent $3,000 on deposits and inspections on homes we didn’t purchase; that I didn’t find new customers for our business; that I haven’t made any money since my stroke. He can’t forget these things – and I can’t forget that he thinks that way. I honestly feel like I am a failure because I spent the last 20 years dominated by illness and fear and temporary, non-career things such as getting the Greater Brunswick Charter School off the ground, literally, by getting it into two temporary and its final permanent home, or getting us into our own home. I had wanted to own a home so much, after living in an apartment for 25 years, that a lot of my energy 10 years ago went into finding, acquiring and fixing up the home we are in now. The decisions I made seemed correct at the time, but they assumed a future in which I would always have my health, and living in an America where there would be employment opportunities. Now those decisions look like those of a fool, because I am facing penury, the end of a loving marriage and homelessness.

These pressures have driven my pain through the roof. The pain is so energy-sapping, and so brain-fogging, that I can’t do much thinking by the end of the day. When I do think, I see myself rolling down the sloop of “middle class disappearance” into a pit filled with the bodies of the ill and unlucky. I will become one more object lesson, one more story about how the unfortunate or the undeserving drove down the life expectancy numbers in America in the 21st Century.

One of the saddest things for me has been the loss of almost all off my friends from the CPSF. The organization was moving forward well until we got to the point of deciding how to apply for our 501(c)(3) status, To apply along the regular channels would have taken over 18 months. To get an approval faster would have meant getting an “expedited review”; to have an application approved in such a manner, there must be outstanding promises of grants that would expire if the receiving organization wasn’t approved as of a certain date. Other projects, such as developing a Volunteers Committee, have fallen by the wayside, as the Board members got sicker, or pursued their own hectic lives. I needed support I received from them, and fell into an even deeper funk. (Here’s a shout–out, however, to my Vice-President Lisa Budzinski, who has always been there for me.)

But the CPSF isn’t about me – or not just me. It’s actually about every one of us who have incurred this scourge from whatever cause – a brain injury or a spinal cord injury. A year and a half have gone past since I began this work in earnest, and the past half year has been almost completely non-productive. I may not be able to save my house, or ultimately my marriage, but I can theoretically control whether the CPSF comes to life. My sense of my own failures is a terrible burden, though. Do I know enough to make this work? I don’t know any 1%ers, the movers and shakers of capital that have no real use for a little person like me, one of the 300 million living paycheck to paycheck. How can I create a vibrant, influential 501(c)(3) – which is what all the people with CPS need and deserve – if I don’t have the connections or the knowledge, and very little information on how to gain them?

The only way to avoid ending up in that pit of the damned is by clinging to the sides and pulling myself out. I must find the will and the strength to overcome it, or I will not be able to survive the potential catastrophes ahead of me.

There are a few things that have improved this past year, my physical health being one of them. I’ve lost 25 pounds and my blood pressure has responded modestly. The loss of the equivalent of constantly carrying a toddler has relieved some of the spasticity pain. I’ve begun a modest program of resistance training for my upper body, which is both strengthening and toning my extremely weak and flabby left arm. (One of my goals is to be able to extend my left arm completely towards the ceiling.) It’s easier to write; the words float out of my brain more fluidly. I don’t even need my cane anymore. So Eyes on the Prize – things can improve.

But there is a whole world from which I remain cut off, and in which I long to participate. Is this just the fate of CPS patients? The longer we are in pain, living by sufferance of the drug companies whose nostrums must be consumed every 6 hours, the more isolated we become, and the more depressed. Even people within our own families grow frustrated with us, and just plain tired of being around us.

The medieval Catholic Church taught that there were many horrors of Hell. There was, of course, its unspeakable pain, pain caused by fires that could never be quenched and that burned the body without consuming it. There was its eternal nature, the fact that you would know that you could never, ever escape: it was your fate for all eternity. But, perhaps, most cruelly, there was the condemned’s endless remorse. Trapped in Hell, you would always be aware that it was *all your own fault.* You yourself, and your actions, were the reason that you were doomed to suffer for eternity.

There are cyberplaces where CPS is known and discussed – the CPS_Alliance@yahoogroups.com being the oldest. But there is also a CPS page on Facebook, a private CPS group on Facebook, and now the pages for the Central Pain Syndrome Foundation, the nascent 501(c)(3). It’s practically a daily occurrence that CPS sufferers or family members join one of another site. Everyday, another member signs up. All of us are looking for answers, or at least information. It’s positively soul-crushing to discover there really is none.

There are as many ways to discover the name for this intense, constant pain, as there are people who have the ill fortune to develop it. Some folks, like me, are very lucky. I found out only four days after my stroke, while I was still in the hospital. It only took politely demanding information from two doctors before I heard one say, “I think I’ve heard of something like this. Let’s start you on gabapentin, and see how that works.” At the same time, nobody that I spoke to in the hospital could give me any more info about whatever was causing the increasing torture I was experiencing. So, surprisingly, shockingly, I discovered that medical professionals couldn’t help me. It seemed impossible that no physicians understood this scourge. I was convinced that it was perhaps because the excellent members of the Neurology Department at my top Research Hospital were out of the loop on CPS studies. It was harrowing to think that the “top docs,” the experts that I was depending on to heal me, were essentially as clueless as I was.

Well, of course no one expert can know, *I* would have to find out all about this disease.When I got home, I spent a month googling various terms “thalamic stroke,” “post-thalamic stroke syndrome,” “dejerine-roussy,” “central pain syndrome.” There wasn’t very much information on the web in 2007. A lot of it was on sites specifically for the medical profession, and behind steep paywalls.

Still, I searched and searched, certain that the medical profession wouldn’t have left the sufferers of such a bane without recourse. There must be some effective treatments! There was certain to be research ongoing. Perhaps someone had found a cure! I was certain I could uncover it, and help myself. When I found the CPS Alliance, it was such a relief. Hope, eternal even though banked, sprang up again. Here was a group of hundreds of patients, helping each other. Surely there would be answers to my questions there!

Again, no joy. We were all a united brotherhood in two things: an unbearable, indescribable pain – and a frustrating search for a cure, for effective treatment, hell, for doctors that even had any idea what was wrong with us! We traded potential solutions, many still experimental, such as ketamine infusions, and Deep Brain Stimulation. Nothing seemed to work for long. Treatments that relieved pain for a week, maybe two, eventually folded underneath the people who tried them like broken folding chairs, leaving them even worse off than before.Eventually, a group of the more healthy, determined and desperate of us started the long process of creating the CPSF. It seems the only way to get the research done, and the answers we need, is to finance that research ourselves.

But while I was performing my own fruitless searches for the CPS Anodyne, more and more people kept joining our groups. Most of them were completely bereft. They had been kicked from ignorant doctor to arrogant ignorant doctor to flummoxed doctor for years, with no answers. They often didn’t know the name for what was tormenting them until they did web searches and found the patient groups pages. The stories of suffering were overwhelming and emotionally draining. The amount of physical torture that our members had suffered for years, with no true respite, was staggering. Doctors who didn’t know about CPS refused to help[ these patients, because they refused to believe their stories. The patients were “drug seeking,” “hypochondriacal,” “neurotic,” even” “schizophrenic.” So of course they were sent home with pamphlets on mental techniques to control pain, instead of actual pain relief.

Not only that, CPS had destroyed more than their bodies. It also frequently destroyed their families, their finances, their entire lives. It’s incredibly difficult for even “lucky” patients on “good” days (stable barometric pressure, the right temperature range, no stresses, no demanding activity, sufficient sleep) to have more than four hours of productive,somewhat taxing work. This means that you can’t hold a steady job – but you probably can’t collect any kind of disability, including Social Security. You will have to hire a lawyer you can ill afford to win your SSI benefits, and those are not enough to cover your living. Judges who award disability payments don’t recognize it. If you can find a physician who understands your disease and write you prescriptions, the treatments are expensive. Spinal CPS sufferers, in particular, can often only find relief in narcotics, and the Federal government’s regulations on narcotics make it very difficult for them to get what they need for pain relief.

Without their job, without an income, and in constant burning torment that no one can see, and that almost no one has heard off – if such a person is married or in a committed relationship, they have immediately changed in major and important ways. All of the expectations and plans that a couple may have made now must be altered or abandoned. Joint financial obligations, such as a mortgage, become dependent on the one healthy person who can work. Frequently, the burdens are too much: the spouse leaves, the house is foreclosed, a person is left alone, alone, alone, with nothing but the terrible pain that will never end as long as you live, and a perpetual struggle to survive financially. Suicide begins to look like a reasonable choice – at least you won’t be living in endless excruciation for decades to come, alone and unloved.

Yes, it is a prison, and the prisoners have been sentenced to a life in what seems solitary confinement. I often envision it as a psychological form of Jeremy Bentham’s panopticon prison, illustrated above. In 1791, the Utilitarian philosopher proposed a new form of prison to the British government, one designed to cause psychological distress among its prisoners (as well as saving money on guards). He proposed a circular prison, with a guard tower in the center, and cells arrayed along the outside walls like petals on a sunflower. Each cell would only hold one prisoner, who could not see or converse with any others. The tower itself would be concealed by venetian blinds, so each prisoner could never be sure whether he was being observed or not. This was designed to create a permanent sense of *helplessness* in the prisoners, who, having lost all hope, would become docile. The benefit to the government was that it would be much less costly than the regular chokeys, with their cells laid out in rows. This would only require a few guards in the center tower. But since the prisoners could not see the guards, they could never be sure whether they being were watched or not.

No panopticon prisons were ever built, but the concept has been often used as a metaphor for the Surveillance State, a 1984 vision of a citizenry kept in line by the idea that. at any moment, Big Brother might be watching you. (You may here about the panopticon during discussions of Edward Snowden’s revelations in the past week about the possibly unConstitutional activities of the NSA.) But if CPS survivors live in a prison , it is a panopt6icon. (I don’t know enough about the prison at Guantanamo to be able to use that as a metaphor.) We are all helpless under the perpetual presence of the pain, who has been made our jailer for a lifetime. We all feel alone, trapped in our narrow cell, with no knowledge of any other prisoners in similar situations. The loneliness compounds the stress, which intensifies the pain. What is worst of all is that we don’t have any idea why *we* have been so incarcerated. The jailer s heartless; even a hunger strike will not move him. There is no possibility of appeal.

This is the Central Pain Syndrome that we have all discovered We didn’t know the name of our prison at first. It was only persistence, and the hope of finding relief, that made most of us pursue its name. But knowing the name of our jailer isn’t enough. We need to break out of our separate cells so that we are no longer suffering from the torments of solitude.

Most of all, we need hope that we will someday walk out of this prison. We have to plan and stage that jailbreak ourselves.

How did you discover CPS? How long did it take you to find its name after you first experienced it? Every piece of our testimony will help chip away at the thick stone walls that imprison us.

Back in the Ancient Times, when I was a young feminist in a conservative all-girl Catholic high school, Erica Jong became an overnight success with “Fear of Flying.” It captured the zeitgeist! Well, if Isadora Wing were to tell the story of herself and her contemporaries today, capturing the spirit of *their* age, it would be called “Fear of Falling.” (I’m not the first person to have made the connection.) The generation of men and women that were in their 30s in 1973- Isadora’s cohort – are now in their 70s, and are all prone to the dangerous and debilitating falls of the weak and unsteady.

But I might as well have been in my 70s, because of balance problems and muscle weakness post-stroke. I have fallen again, at least twice, since writing about my fall down the stairs. Late nights and the kick-in of my “midnight” prescriptions make sure that I sleep, but they also make me prone to tumbles. These are really “falls”, so much as buckling legs that give out under me because of the muscle relaxers prescriptions, combined with fatigue. One that I incurred in February was not very bad; i was able to keep my head from hitting anything. But one collapse, approximately two weeks ago. really scared and injured me. I got up from my desk feeling perfectly alert, if tired. The next thing that I remember is lying on the floor with my left leg folded under me and a very achy sport on the left side of my head. My fall had been broken by some storage boxes, so it wasn’t as bad as it *could* have been. (I might have smashed into the exercise bike.) Nonetheless, I had re-torn my left hamstring, and given myself a concussion. As I realized what had occurred – the full ramifications of which took a few days – I was terrified. I envisioned an possible life comprised of more and more collapses of greater pain and injury. I imagined my brain covered with large bruised and non-functioning patches resulting from direct and contre-coup blows.

The week following, I hobbled around on crutches and slept twice as much and made a lot of typos. But I also considered how I could control and reduce both the risk of falling, and the damage that a fall might do. Obviously, the commonsense advice of de-cluttering one’s environment was completely pertinent, if very tough to do. But the biggest issue – literally – was my weight. I knew that the less weight I had to deal with, both the more nimble I would become, and the less damage I would do.

I haven’t talked about my weight here – no woman wants to confess their weight issues in public. They attempt to hide their weight as much as they can – whether with Spanx, tunics, or headshots.I had always been thin, and when I got married, I was working at a job that kept me on my feet and physically active all day. After returning to school, I put on ten pounds. When I became pregnant, I put on 25 pounds – and after Jake was born, I was left with 18 of the baby weight, and general weariness. It turned out I had developed an auto-immune thyroid disease during pregnancy (relatively common) but it made my weight continue to spiral. When we moved in 2003, I weighed 185 pounds, although I lost 10 while working on fixing the house. 175 was the lowest weight I have been in ten years. A little less than four years later, I had the stroke, and was left weak and often simply sitting in a chair for almost the whole day. At my heaviest, after Kingmas 2011, I tipped the scales at 215, 80 pounds more than I weighed when I came back from my honeymoon. Only if you have suffered a weight problem such as this can you understand my existential shame and horror.

215 was, of course, a Kingmas aberration, our family’s holiday in which fattening foods and sweets are shared. So I lost ten pounds the next month.. But I realized that I had been trying to control my weight all by myself for at least 20 years, and it wasn’t working. It’s not that I wasn’t motivated. It wasn’t that I didn’t know the facts about nutrition. It wasn’t even that I wasn’t disciplined. But I ha an addiction to simple carbohydrates, which grew worse at night as the CPS pain grew more exhausting. Mainly, though, it was because I was alone, in a house where no one really was interested inc changing the way they ate. I realized that whatever I had been doing wasn’t working. I joined Weight Watchers.

The meetings I attend are on Sunday mornings, and sometimes it feels like a Unitarian meeting. Men and women, from the-people who are 100+ pounds overweight, to the slender marathon runners who have been “at maintenance” for years, all gather to share their stories, the battles, their victories (“bravos”) and their failures. It is tehe one safe place where we can actually talk out loud about the pressures of being overweight in a culture that praises and overwhelms us with the images of the very thin.We are attempting to change out eating habits from the standard American diet of heavily subsidized corn, sugar, wheat and fatty meat to one based on lean protein, produce, and whole grains. The marketing of thinness, combined with the national financial support and heavy advertising of foods that make you fat and ill, can leave a person whiplashed. But at least there is one time a week when we can talk about that schizophrenia in our culture.

Of course, I have an additional problem, in that my prescription medication are know to put on the pounds. A good many of our members have quit gabapentin or Lyrica, even if it gave them some relief, because it caused them to gain as much as 30 pounds. I had found that my gabapentin made it more *difficult* to lose, but at least didn’t make me heavier. I knew that I had done that on my own. How? Why, the notorious “White Foods,” of course – flour, sugar, rice -and sweeteners of all types, have both an addictive and a wicked effect on me. Even though I lost 10% of my body weight by going to meetings and tracking what I ate, I was still yo-yoing up and down between 190 and 185.

Falling two months but the fear of my own mortality into me. The examples of my parents showed me what my present course was leading to. I knew that I had to get rid of the extra weight, and make myself strong. If that means cutting out all sugar, or all American wheat products, so be it. I’ve done that. I’m at my lowest weight in 10 years. But the difference it has made in my balance and agility is the payoff. The less weight I have to maneuver, the easier it becomes. That, of course, leads to more activity, which makes me stronger and more flexible. At the meeting this past Sunday, a woman who had lost 50 pounds was carrying her “reminder” – a satchel filled with 20 lbs of pennies. It was difficult for me to even pick up the dead weight. Every 20 pounds that I lose is one less dead weight baggage. “Dead” weight is what it is.

Death can come upon us in so many forms, swiftly and unexpectedly, after a long struggle with illness, or slowly creeping up as we sink into the lassitude of an exhausted old age. Perhaps my end will be as sudden as a misstep, a stumble, and a blow to the head. But I can reduce the risk of that conclusion by altering the equation.

Isn’t that what reducing risk is all about? We theoretically purchase insurance (if we can get it) to reduce the *harm* that would be caused by injury. We also reduce our risks of car accidents by cautious, alert driving, or of cirrhosis by eschewing too much alcohol, or of lung cancer and emphysema by avoiding cigarette smoke. We can reduce our chances of slip-and-falls by removing items that might trip us. But how can an everyday person reduce their chances of developing Central Pain Syndrome? Its visitation upon humans seems purely arbitrary. There may be professions in which you may be more prone to developing the injuries that cause CPS – such as military service or playing professional sports. We could make those safer, or at least inform those involved of the risks.

Ultimately, though, we do not know enough about CPS right now to even treat it effectively, much less cure it or prevent it. That is why we in the CPS community, and I personally, must work on both strengthening and protecting ourselves from further injury. Most of all, there is a responsibility for those of us who know this pain, and can still function and communicate, to tell the unknowing or oblivious about this disease, its etiologies, its present treatments, and the demand for research. Forewarned is forearmed. It’s the reason we listen to traffic reports – so we can plan a safe and efficient path to our destinations, and arrive there whole and happy.

How do you get to sleep when you are burning in a pool of fire? You don’t. That was one of the tortures of Hell that I was taught about as a young girl in a Roman Catholic school: Hell is endless pain, so bad that you can’t even seek solace in sleep. At that age – 5 or 6 – I couldn’t really visualize what they were talking about. Pain like a skinned knee? Pain like my sore, raw throat scar after running in the cold winter weather on the playground, or after my tonsils had been removed? The nuns said that we should imagine getting a burn from a stove, or from a hot pan or dish – only it was all over your body, and it never, ever ended, and you couldn’t ever escape it. Plus, you never went to sleep. Yes, my nuns talked about Hell in italics, perhaps so that little children who had never really suffered pain might try to comprehend it. After all, *not* going to Hell was the big reason to be “good.”

So now I live halfway in Hell, and consider myself lucky. Yesterday I met a 47 year old single father, who injured his cervical spine in a car accident almost 20 years ago. He has had CPS that has gradually advanced so that his entire body is racked with pain. The electrical shocks are so bad that he loses muscular control and falls down without any warning. (Talk about a dangerous situation!) He can’t get health insurance, so he can’t afford to be treated. He can’t get disability, because both the insurance companies and the Social Security Administration deny that he is “disabled.” Of course, with Spinal CPS, there are almost no drugs that are effective for his pain. Worst of all, his doctors have no idea of why he is in that much pain, and are at loss to treat him. All he can be offered is Oxycodone and distraction.

Compared to his situation, mine is a romp in the daisy-strewn summer fields. But we both agree on one thing: it is almost impossible at times to get to sleep. You lie there, exhausted, drifting in and out of early REM sleep, only to be awoken by either a gradually increasing awareness of extreme pain, or perhaps by a sudden stabbing, or crushing, or electrical shock. The sudden ones are the ones that awaken you completely… leaving you to try to get back to the state of exhaustion, which might lead to sleep.

All of us with CPS are racked by sleep problems, We can’t get to sleep, and lie there most of the night in agony. We know that we need sleep, because only sleep will create the neurotransmitters that give us *any* relief at all. It is only after five or six hours of sleep that we can think clearly. For instance, I can only write this little essay now because I got nine hours of sleep last night -hooray! Most days, however, I can’t get to sleep until 2 AM or later, and then am troubled by nightmares, as the pain seeps into my sleeping consciousness. I take all my most soporific drugs in my last batch before bed. Sometimes these have worked so well that I have collapsed with water leg muscles before making it to the safety of the bed. The prescription drugs we take give us very vivid dreams to begin with, so the dreams of horror and torture are very realistic to our REM state. Our blood pressures must sore during these dreams, but what can we do to prevent it? Only take our drugs (if we have some that work) religiously. The gabapentin and baclofen and amitriptyline and Fentanyl and morphine patches have become our new Communion wafers. We are told that stress is the single largest trigger, but how do we avoid that?

So, in spite of all our religious practices – pills, meditation, gentle exercise, carbohydrate avoidance, gentle yet exhausting exercise and the rest – we will still find ourselves staring at the darkened ceiling, but seeing flames. How do we get to sleep? That is one of the big questions we ask each other, and we pass around our successful practices like talismanic rituals. “This is what worked for me,” we say, “so you might want to try it.” Even as we recommend our sleep systems, we know – just as the CPS patients we talk to know – that what works for us may not work for them. CPS is an umbrella diagnosis like cancer, and each case is different, and will respond differently to treatment.

Listening to audio books, what were called “books on tape” just a year or so ago, has been one of my main antidotes to sleeplessness ever since I was in the hospital following my stroke in October 2007. Back then, my brain was too battered to think very deeply. It gave me a headache to attempt to read, and logic puzzles frustrated me. Current events, one of my great passions, made me so distressed that I had to turn off the news of the hospital television. I was frightened by having apparently lost great portions of my intellectual capability, my “Self,” and needed comforting. One of the only things that I *could* stand was watching “Meerkat Manor“, which was in heavy rotation on Animal Planet. The story of the Whiskers family was both familiar to be comforting, and distant enough to be non-distressing. When I wanted to get to sleep, however, I listened to narrations of Agatha Christie books on my iPod.

I had read a few Agatha Christie books in decades past, back when some of her Poirot novels had been made into films. I knew the surprise twists in “The Murder of Roger Ackroyd, “Murder on the Orient Express,” and “Death on the Nile“. I had watched the PBS Mystery! dramatizations of the Poirot novels, which starred David Suchet, and the Miss Marple novels, starring Joan Hickson, back in the 1980s. So these stories were comfortingly familiar to me, even if the details had been forgotten. They were diverting enough to distract me from the pain. They could command my attention if I could not sleep. They could lull me to somnolence when that blessed spirit laid its hand on my brow. They followed predictable patterns: Poirot always gathered all the suspects into a single room, in order to reveal the killer, at the end of each book. There was always a successful conclusion to the mystery, which was a condolence to one faced with an intractable problem. The language Christie employed was advanced and British, and yet not academic, so listening to them soothed my battered verbal facilities back into shape.

There was also a distinct pleasure to listening to Agatha Christie books, in that the woman wrote so many of them – 82. I certainly hadn’t read all of them, so there were new mysteries, with their solutions unrevealed, for me to listen to. Because Christie is the undisputed favorite English novelist of all time, all of her books had been made into audio books, even the slighter series like “Tommy and Tuppence,” and “Inspector Battle,” or her one-offs, such as “Ten Little Indians.” It was fun for me to search for the collect the audio books. (MP3s don’t take up a lot of room, either, which is essential for a clutter-addict like me.)

Listening to as many of her 82 novels as I could find, in addition to narrations of her short stories, and BBC Radio dramatizations of perhaps four dozen, took me the better part of 18 to 24 months. After that, my bedtime listening became that of P.G. Wodehouse works, another vastly prolific and somewhat formulaic British author of the first half of the 20th Century, with over 70 novels and 200 short stories to his name. Wodehouse was the author of comedies – romantic comedies, manor-house comedies, and comedies of errors, but was like Christie in that they were somewhat formulaic, and often found in series, such as the Jeeves novels, or the Castle Blandings books. Wodehouse, like Christie was someone used the English language like the paintbox and brush of a true artist. Almost all of his works had been read into audiobooks, because Wodehouse, like Christie, has almost obsessive aficionados, many of which had discovered him in the 80s in British television dramatizations. The parallels with Christie are numerous, and his novels were a natural followup to hers. Listening to his audiobooks gave me great pleasure for another one to two years, and I was sorry to see the list end.

I’ve listened to other audio book series, most transfixingly the Aubrey/Maturin series of novels by Patrick O’Brien. These have been some of my great novelistic loves since reading “Master and Commander” in 1980. I was fortunate enough to be able to read many of his books as they were published, and looked forward to each new volume. I was very sad that O’Brien died before he was able to finish his final, 20th volume, which would have finally brought Captain Aubrey home to his Sophie for good. Listening to those 20 books on audio took another year or so.

This has been my bedtime listening since my stroke – mainly fiction. They are like the fairy tales and children’s classics that my grandmother would read to me to help me get to sleep as a tiny child, ill from her tracheotomy or her frequent throat infections, or even her tonsillectomy. I suppose that if they had given me a bottle of warm milk to get me to sleep, I would have been craving something similar as I lay in the dark nights these past five years. Instead, I was fortunate enough to have been rocked to sleep with stories.

So I have loved listening to the audiobook of “A Distant Mirror: The Calamitous 14th Century,” , for which Barbara Tuchman won the National Book Award for History in 1980. I had never read it before. It was a wonderful experience to hear how Tuchman wove so many disparate threads- the personal, the political, live daily lives and vast historical sweeps, and the analogy to our own times. For the past three months, I have looked forward to hearing a chapter or two as I fell asleep, transporting me back to a time so distant as to be almost completely unlike our own in its surface appearance, and yet still peopled by the same sorts of individuals, motivated by the same goals, and creating the same conflicts.

That anticipated and pleasant nightly sojourn was ended two nights ago when I could not get to sleep, no matter what I did. I was so tired that I fell asleep sitting up, and yet could not stay asleep as a paroxysm of pain would seize me. I drank a shot of gin as an anesthetic and laid down in bed at 1:30, figuring that it was safer than falling out of my chair. I turned on my iPod, and dialed up the Tuchman, knowing I had at least one-fifth of that 600+ page book to divert me. Surely, I thought, that would be long enough to carry me to Slumberland.

No, it was not. The pain won that night, beating darkness, warm comforters, gin, extra gabapentin, and one of the best narrative historians who has ever written, When I heard the final chapter end at 5 AM, I was still writhing. The dependable panacea had failed me. As I watched the dawn light rising – so much earlier in February than it had been in December – I tried to gather what comfort I could from the wondrously dependable presence of my husband next to me, in the bedframe that we had shared since switching to a futon in 1992. I used one-point meditation in an attempt to change the mental subject, and finally fell asleep right after the clock radio burst on with “Morning Edition” at 6 AM.

I know how much more productive I could be if I could only get eight hours of sleep a night, and arise at 7:30 or 8 instead on 10:30 or noon. One-point meditation usually isn’t the answer unless everything else has failed. It has been five years that I have been racked by broken sleep, broken dreams, terrible hours, and the dark nights of pain.

Yet, as bad as my nights may be, they are as a stubbed toe in comparison to some of the other CPS patients I know – the Spinal CPS sufferers. Yesterday, my friend with Spinal CPS told me that he didn’t understand how our government could be so cruel, denying any form of help to those of us suffering from this. I replied that it was in corporate interests to make sure that we are never recognized or supported financially. We paid into our disability pools, insurance plans, and Social Security funds all our working lives. If the people that received our money can find a way to keep us from receiving benefits, they can “keep costs down and profits high,” and thus earn themselves millions of dollars in salaries and benefits each year.

In the meantime, all we can do is hope to survive until we reach 65. Sometimes I believe that the actuaries and Boards of Directors that run our for-profit system have made a calculation that it is cheaper to let us die than to pay us. Would the American people as a whole decide that same thing, if they knew about CPS/? Would they chose to let the millions of us who are suffering from this worst of torments, living up to the fires of Hell analogy, continue on untreated for decades, until death takes us, whether due to “natural” causes or to self-slaughter?

That is a question that cannot be answered until it is actually tested, by placing this issue in front of them. In the meantime, if you have any tricks to help me get to sleep on time, please let me know.

The day came and went, and we are all still here, in the exact same spot.

I haven’t written in months, ever since my father’s passing. It was his birthday this week; he would have been 85. It is profoundly sad that he was so isolated at the end, even in his own mind, a man who I knew as an extrovert. He loved working at the pharmacy, because he met people from all walks of life, from the plutocrats like C. Douglas Dillon and Pierre Lorillard, the owner of Lorillard Tobacco, to the delivery guy from the drug stockist, who only spoke Spanish. Ernie learned a bit of Spanish to converse with him. He made us take Spanish as our language in high school, rather than French, because he was convinced that Spanish would be an important language for Americans to know. He was correct, of course; I remember more of my high school Latin than I do of my high school or college Spanish. (Thank you, Sr. Redempta, wherever you are.)

I loved working at the pharmacy, as well, and for the same reason. I, too, have been an extrovert ever since I was a tiny child. My mother relates a story of taking me with her to a ladies’ party when I was three. I went around the room, shaking the hands of all the women and introducing myself. I have always loved getting in front of a crowd and speaking to them, seeing their faces as they moved into my narrative with me.

Now I am isolated, physically and socially. This disease does not. Not having a license does that. Pain and its attendant depressions do that – the pain especially. All of the members of the CPS Alliance speak of this same isolation. That is why the group of us that have incorporated the Central Pain Syndrome Foundation have chosen “You Are Not Alone” as our organization’s motto. Hundreds of times I have seen new members to the CPSA or the CPS FaceBook page say, “I thought I was the only one. I felt so all alone.” Well, they are not alone. There are millions of us.

When it comes down to it,I am not really alone, either. I may not see many people in the flesh, but I am fortunate to live in an age when the internet has permitted communication between people from around the globe. The FaceBook page, in particular, seems to have a very lively and close group of people, who feel emotionally connected to each other. That may be because we have photos next to each post, and can discover facts about the posters by looking at their pages. There are so many opportunities for me to reach out and connect with other people. The problem is that I am often to exhausted to make the effort, and am frequently in too much pain to even answer a phone call.

Part of the isolation is the structure of my day. Upon awakening after seven to eight hours of decent sleep, I have energy, and can actually do intellectual work for approximately four to five hours. That is the period during which I must write, organize, and plan – in every area of my life and responsibilities, These include the CPSF, the CPS FaceBook page, any pertinent responses to the CPSA, our business, our bills, our home, keeping track of my ten prescriptions, and even our menus. Or finances are in poorer health than I am, and that puts me under tremendous stress. I often feel hopeless to accomplish anything, as if I have no definite path to fix things, and that causes even *more* stress. The stress makes the pain flare. The pain makes my blood pressure skyrocket. My body is so tense most of the time that I cannot determine what is the spasticity and what is just the effect of wincing from the anticipated blow of bad fortune. To discover stress is as life-that shortening as smoking five cigarettes a day is stressful in itself!

I am also alone in my home. My husband and my son are both introverts. Jake stays in his room for most of the day, coming down to do chores if I ask him, or to make dinner. Jack stays in his office most of the time, unless he in out of the house at calls, or watching television in the den. I am no long a television watcher; endless shuttling through the cable channels makes me impatient and annoyed. So I sit in the living room every even, playing an MMORPG with a group of people from all across the world. At least half of the people in my group are adult close to my age or older, often disabled. At least two of them also suffer from CPS, although they didn’t know that was the name of their pain. The game distracts me from my body’s increasingly arduous travail, and the online conversation gives the effect of a cheerful “family.” But the upshot is that the three of us really only are together when we eat meals.

What is increasingly obvious is that my husband has almost no romantic feelings towards me anymore. He is loving in that he cares for me in many ways, working at his tasks, running errands, paying for my medications, but my thoughts no longer interest him. Neither does my body. He has no desires for me of any type. Perhaps it is age; perhaps it is proclivity; perhaps it is stress. My body has changed; so has his. Perhaps it is that I, and this marriage, have disappointed him past caring. But the situation of my marriage is a stress in itself. I still love him romantically, and long to be close to him, but those feelings do not seem to be reciprocated.

All of these are the contingencies of life with which I mut deal. There are some things I cannot control, and some that I can. There are steps that I can take to ameliorate my situation; those are the efforts that give a sense of power. The rest, I must learn to accept without ill will.

Now admittedly, we at the soon-to-be Central Pain Syndrome Foundation, Inc., are determined to make the story of CPS known by more people, and certainly longer-lived, than a video of a dachshund in a grey wool sleeve. (Don’t worry; Oscar gets free.) We want to get more attention than a dog video. We even want to get more attention than a cat video on reddit. And we believe that we can get it.

But I must admit that the headline made me wax philosophical. Do people have so much time to waste that they would use some of their life to watch a minute or more of Oscar excitedly trying to please his masters, as they keep calling him to come to them, while he can’t see them eluding his attempts to reach them, and laughing at his predicament.? Well, I obviously watched it, or how could I tell tell you what was on it?

When you have CPS, you have a mixed attitude towards living a long life. As a far better writer than I could ever hope to be has said it, “Like anybody, I would like to live a long life. Longevity has its place” There is, quite frankly, so much to live *for*. Pain, debility health and fiscal concerns all make the present sometimes seem bleak. But I no longer have the desire or the impulses towards self-murder. I am fighting to stay alive as long as I can. But there is fear in the uncertainty, because of the mystery as to the cause of my first stroke (see the way I think?), and what can be done to treat my collagen disease (which may be why little blood vessels in my head blow up under high blood pressure) Of course, it’s not like I have any health coverage, or could afford to treat whatever is wrong with me.

So CPS patients *want* to live, desperately – just as desperately as they want to live without the analgesia dolorosa. But do we really want to spend a minute of the span that we have left on a dog-in-a-sweater video? Of course, there may be some laughter or happiness evoked from the video, a momentary diversion from the constant buzzing of the body – and God knows we depend on diversions to keep our minds off of “it.”

But I also have to ask, “Why would someone without Central Pain Syndrome spend a minute thinking about it?” It’s certainly not fun or amusing. It doesn’t being a smile to your face. Actually, I’ve seen the look that it beings to people’s faces: anguish on the sufferers’ and repulsion on the non-involved. What would make you care about Central Pain Syndrome? About the life of someone who has it? About hundreds of thousands, if not millions, of people suffering from it? Perhaps you read this blog, and spend your precious minute or more of life, because you have CPS. Perhaps you love someone who has CPS. But what makes the game worth the candle?

What do we, the CPS patients, need to say in order to get the rest of the unpained world to care about us? It is obvious that for some people, such as my sister, it is much easier to live in a world where you don’t have to think about such diseases. What are the chances that an average American will get CPS? Honestly, I have no idea. It’s not like I have scary statistics about smoking, the way that the American Cancer Society does. Everybody has pain, especially nowadays. What would make people care about other Americans with CPS, when there are so many other suffering people in this country, who are in agony, mentally or physically or both, through no fault of their own. It seems as if our country doesn’t have enough money to help the blameless, much less those who are in any way culpable for their misery..

So I believe that CPS can achieve notoriety, as in becoming “the Disease of the Week.” There is an ever more ravenous maw of popular culture that must be satisfied. Its metabolism has been sped up by the internet so that it might as well be a hophead. I have no fear that any media that makes a headline out of “Dog in Sweater flops around like worm.” will ignore a more pitiable and grotesque tale when it is presented with one. But notoriety will not help us. Enough money to fund better treatments and cures will. How can we overcome the horror that makes so many people turn away when they hear about the true affects of CPS? How can we reach the hearts – and obviously, the wallets – of so many people that have never <em>heard</em> of CPS as of yet?

Finally, what would you, beloved reader, like me to write about in this sometimes-chronicle of a life with Central Pain Syndrome? What makes it worth spending minutes of your life to read this?

This song by Garbage has been pervading my dreams, a real earworm that I can’t get rid of. It’s this chorus that I keep hearing:

A stroke of luck or a gift from God?
The hand of fate or devil’s claws?
From below or saints above?
You came to me

Here comes the cold again
I feel it closing in
It’s falling down and
All around me falling

It’s as if I’m singing to the CPS itself Was my stroke, and the CPS that followed right upon it, a stroke of luck, in that it has given me a purpose, one which I would never have found without it? Was it the hand of fate, or devil’s claws, that ripped a hole in my thalamus? that cold that is always falling around me, falling into me, is burning as well, is tingling like an electrical shock, is crushing like grief. Too often, like this month, it has all been closing in too much, like the garbage-cruncher in “Star Wars (no. 1 or no 4, depending on what version you believe in). If only there was some R2D2 out there that could shut it down. But it is obvious to me, and to all the other sufferers/survivors/endurers/patients of CPS, that we have to shut down the pain ourselves.

This month has been both exhilarating and gut-kicking, head-smashing tragic. On July 3, I met with the New Jersey Center for Non-Profits. Our Charter Committee to form the Central Pain Syndrome Foundation had collected enough money in donations from the members of the CPS Alliance yahoogroup that we were able to become members of the Center, and become eligible for all the benefits and assistance that they provide to new non-profit start-ups. More importantly, though, we were able to purchase their Toolkit of Legal Assistance Services for newly-forming non-profits. It includes guidance on how to incorporate, how to write your by-laws, how to solicit the correct people to serve on your Board of Trustees, and how to complete the “Application for Recognition of Exemption Under Section 501(c)(3) of the Internal Revenue Code.” , known as Form1023. (And a honking great application it is, too – I got it it in the mail Thursday.) But once we have incorporated as a non-profit in the State of New Jersey, we can actually begin to operate as a full patient advocacy organization.

I met with Debbie Duncan, the director of the Center, and her staff assistant, Erik, and they couldn’t have been nicer or more helpful – in spite of it being 4 p.m. on the afternoon before the July 4 holiday. They told me that they rarely saw such a professional preparation for a non-profit application. More than that, they thought that our vision of a national organization that could help the perhaps one and a half million people with CPS in this country was not only achievable, but almost certain to be tremendously successful – especially since we are the first such group in the nation. We have a compelling, if terrifying cause, and a remarkable story, in that it is the *patients* who have realized the extent of this problem, and are forming their own group to combat it. I left that meeting on a cloud, which certainly carried over through the holiday. On July 5, I notified all the members of the team, and we all were practically giddy

The reason for our giddiness is that we are so close to actually incorporating. We have done a great deal of prep work, and must do even more work once we incorporate, but at least we will be a legitimate organization. We can begin to apply for various patient education grants given by pharmaceutical companies and philanthropic institutions. We can approach people who would believe in our mission, and get them to serve on the Board. We can begin to create the budget for the administration of a group that wants to reach every doctor in the nation to teach them about CPS (if they don’t already know.) Even more importantly, we want to reach the general population, because we *know* how many people are suffering with this, and don’t even know its name. We want to be able to start to raise money to fund research studies that aren’t beholden to for-profit medical and pharmaceutical firms. There is simply so much to do!

So on Thursday I was flying high psychologically. Then my husband came down from his office about 5 pm, and took me in his arms, very solemnly. “I just got a call from your aunt,” he said. “She saw your father’s obituary in the newspaper. He died Tuesday.”

It was as if someone had delivered a tremendous blow to my whole body. My brain was stunned; I couldn’t think, couldn’t process it. It seemed impossible. If my father had died, surely we, his children, would have been told? I went to the Star-Ledger website, and looked up the obituaries. There he was. I hadn’t really believed it until I read it in print. .There was my father’s obituary. – filled with incorrect information about his military service, and obliterating his entire life prior to his second marriage.

My father had died *two days before*, and neither his wife nor her son had bothered to notify us, his five adult children, or his first wife. I was filled with grief, with anger, with wonder and confusion, with a sense of hopelessness and a sense of absolute misery. My Daddy had died, and no one had told us! It turned out that he had died at home, and been immediately cremated. His wife was too much of a wreck to hold any sort of service, her son said, when my brother spoke to him. I had so many questions that had no answers. We found out some of those answers in the week following, and it became even more clear that he died in the most abject condition. He was covered with bedsores, had shrunk down to less than 80 pounds, had had old wounds from his time in the Army (over 60 years ago) reopen, and had lost all mental comprehension. His wife had tried to care for him in his last few months without any help, and had obviously been incapable. At the same time, she and her son had rejected any form of the frequently offered assistance from us, going so far as to have her lawyer send a “Cease and Desist” letter to me, forbidding me to call them on the phone or come to their house, after I asked them too often about what treatment he was receiving, what medications he was on, and what doctors he was seeing.

For all the grave problems that I had with my father, I loved him deeply. During the time I lived with him, he still owned his own pharmacy, and I worked with him from about the age of five on to the age of 21, when I left home.. I can still remember how proud I felt when he let me restock the candy display that first Sunday “working” when I was five, and when gave me a dime as “pay.” so that I could use the Coke machine on the second floor of the building our pharmacy was attached to. I was proud of “Mowder”s Pharmacy..” I was extremely proud of my father. We kids didn’t get to see him much; he worked 9 to 9 on weekdays, 9 to 6 on Saturdays, and 9 to 1 on Sundays. So working at the pharmacy with him was the way that I got to see him, aside from the drives to school in the morning.

I was aware of the difficulties in my parent’s marriage from almost the beginning of my life. I could hear them fighting at night, when they though t we were asleep. My mother talked a lot about it to me; I probably heard far too much about intimate marriage problems for a child, but she told me I was “mature for my age,” and, besides, who else did she have to talk to? It wasn’t until I was 10 or so that realized that my father had a severe problem with prescription drugs. He was addicted to both Dexedrine and Nembutal, (extremely easy for a pharmacist to obtain) and couldn’t get up without one, or go to sleep without the other. They made him dangerously unstable. He would lose his temper at the smallest and oddest things, and lash out violently. Because of that, I preferred him at the pharmacy, where he was usually friendly, even jolly, and competent. It was at home that you could never tell what was going to happen – like the Sunday afternoon when I was six, and he kicked me in the stomach, sending me across the room to hit the opposite wall, because I’d jumped on the bed to wake him from his nap for dinner. He’d been addicted to these medications ever since he’d joined the Army when he saw 17, and been sent to Korea. He served in the Medics, and his superiors *ordered* the lower ranks to take those pills, so that they could work the 24-hour shifts they were given.

In the 1980s, after my father lost the pharmacy, and then our house, and then the family had spun away from him, he ended up cleaning up. He kicked the pills; he even became a vegetarian. His second wife lived with a very different man than the one that had raised us. His second wife only knew *that* man, and refused to hear an evil word spoken against him. So she never truly understood why all five of his children were so estranged from him.She is Chinese, and she and her son had been ardent Maoists, who left China after the fall of the Gang of Four. She had been a doctor, and her son had been in the Red Guard, so they were very suspicious of Americans. But my father had listened to her stories about China, drawn her out, taught her English. They got married within weeks of his divorce from my mother, and we never even found out about it for 20 years! They lived a very secretive, private life, which he did not divulge to us. He never really made much of an effort to see us, either. We would make plans for family get-togethers, and he would bug out at the last minute. There were other things that were even more painful, but I don’t want to talk about them now. I’ve probably said too much, when this is a blog about CPS.

All I know is that he was the person that my mother listened to when he said, “There’s no need to call the doctor,” or “You’re just being hysterical,” when she wanted to call an ambulance, back in 1956 when I was dying of croup. He was an intelligent man, but he didn’t know everything. But he would get very angry at anyone who questioned him or his judgments. Sometimes his anger seemed to be worse than the consequences, even if the consequences were foreclosure (which we faced twice before he finally lost the house.). My mother didn’t have the strength to stand up to him. His second wife followed what she said were his firm instructions: “No doctors! No ambulances! No outside help!” If this is true, then he died as he wanted to.

His death, and the manner of it, is just so painful for me, who loved him so, and tried to help him in whatever way I could. It would just be such a relief if my whole body and spirit didn’t ache so much.

So I have been incredibly lucky that the CPSF is on its way towards being born. Trish Hughes, one of our team who is a lawyer in Missouri, wrote out our version of the Papers of Incorporation based on the sample in the CFNP Toolkit. We had a CPSF board meeting on Thursday, and formally approved both the papers, as well as the Corporate Officers and the Registered Agent. I emailed a copy to the lawyer who handles these matters for the CFNP. As soon as she approved them, we send them to the NJ Department of Treasury. As soon as we get the paper back, we are officially the Central Pain Syndrome Foundation, Inc.

Then, World, you will hear from us!

We won’t lose any time filling out the Federal application, either. Trish just sent us an email this evening with our proposed by-laws attached, based on the sample that was included in the Toolkit. That woman is a marvel!

So tonight, I am teary-eyed, thinking about my father, and because the NJ 95-plus heat and humidity has made the muscles on my stroked side seize up like one massive charley horse, from my left shoulder to my left ankle. Theses things *hurt,* and there is nothing on Earth that can change that – no pill, no drink, no meditation or music or even embrace. All my life, I had a fantasy that one day, my father would tell me what a beloved and wonderful daughter I was, that he knew how hard I worked, and how hard I tried, and how much I cared. I had that fantasy until I saw him back in 2010, and realized just how far advanced his Alzheimer’s had become. But the dream didn’t die until he did. It was a child’s hope, yet here I am, a grown-up, crying because it has died.

So now it is time for a more grown-up hope, one which I can help to bring to fruition. The hope is that I can help to cure my *own* pain, as well as that of millions more who suffer, alone and with no hope.

But goodbye, Daddy. I love you.

On the back of this photo, my mother had written: Lou goes for a ride on Daddy. “The best fun!”